RESUMO
BACKGROUND: As research teams, networks, and institutes, and health, medical, and scientific communities begin to build consensus on the benefits of patient engagement in cancer research, research funders are increasingly looking to meaningfully incorporate patient partnership within funding processes and research requirements. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities. METHODS: A team of four patient partners with diverse cancer and personal experiences, and two researchers at different career stages agreed to participate as members of the strategy team. Ten staff members participated in supportive roles and to give context regarding different departments of CCS. The strategy was co-developed in 2021/2022 over a series of 7 workshops using facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was subjected to 3 rounds of validation. RESULTS: The co-creation and validation process resulted in a multi-faceted strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized engagement activities spanning the spectrum of research funding, and an evaluation framework. The experience of co-creating the strategy was captured using the Patient and Public Engagement Evaluation Tool and revealed a positive, supportive experience. CONCLUSIONS: Lessons learned included the value of an emphasis on a co-creation process from day one, the utility of facilitation techniques such as ground rules for dialogue, consensus building and Design Thinking, and the importance (and challenge) of designing for and incorporating equity when drafting the strategy. Future work will include implementation and evaluation of the strategy, as well as an examination of further ways to meaningfully and systematically engage diverse voices in research and research funding.
As researchers and healthcare providers see benefits of patient engagement in cancer research, research funders are also looking to engage with patients in their funding processes and research activities. The Canadian Cancer Society (CCS), the largest non-profit cancer research funder in Canada, set out to co-create a patient engagement in cancer research strategy with patients, survivors, caregivers and researchers. The goal of this strategy was to meaningfully and systematically engage with patients in research funding and research activities. Four patient partners and two researchers were supported by ten CCS staff members to co-create the strategy in 2021/2022 over a series of 7 workshops. They used facilitation strategies such as ground rules and consensus building, and methods such as Design Thinking. The strategy was then validated. Co-creation resulted in an easy-to-use strategy with actionable sections, including vision, guiding principles, engagement methods, 13 prioritized activities, and an evaluation framework. The experience of co-creating the strategy was captured using a well-regarded evaluation tool and revealed a positive, supportive experience. Lessons learned during the process included making sure the co-creation process started on day one, the usefulness of facilitating the process, and the importance of considering issues of equity when drafting the strategy.
RESUMO
OBJECTIVES: To discuss the unmet needs of patients living with advanced cancer and their caregivers and to review strategies, including collaborating with community and non-profit organizations, to help improve the experience of living with, and beyond, advanced cancer. DATA SOURCES: Published articles, first person experience (SB), community organization input, and survey data (Canadian Cancer Society). CONCLUSION: People living with advanced cancer face significant challenges, including persistent physical symptoms and psychosocial concerns, difficulties with coordination of care, and possible lack of available resources and supports if the person is no longer being followed by cancer health care professionals. More research is required to better understand the needs of patients and their caregivers living with advanced cancer. Existing resources and supports may be inadequate for this population, and delineation of the unique needs of this population may lead to tailored care plans and, ultimately, an improved experience for patients and caregivers alike. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses are ideally suited to care for this population to help elucidate their unique unmet needs and collaborate with patients and other clinicians to develop interventions to address such unmet needs. Oncology nurses can liaise with community organizations to identify sources of support and resources for patients and their loved ones and advocate for improved care for patients affected by advanced cancer.
